How Hard Is It To Grow Up Being Disabled?

[Jayke 0]

I was born with Congenital Heart Failure, not Congestive and different. With Congenital Heart Failure, my body was not even able to support itself, when I was born I was named one of the nation's sickest infants. In Whittier, California they split apart Imperial Highway just to get me out. They couldn't do it by air because of the weather.

As I grew older, I lived life normally. I never knew what I had. I had lived life as a normal kid. When the time came around when I was five or six I came down with Kalaskis Diease (I cannot spell the first one, pronoucned Cal a sock is), soon after it was cured they dianosed me with Congenital Heart Failure.

My health begun to deteriorate, but still I had no clue of this. Right when I was seven I was sent into the hospital at the University of San Fransico to remove a part of the heart to try and remove the tumor inside the Aordic vowel. Since then, I was never able to run again. I still went to school regularlly, and so on after three months of homeschooling (to be isolated).

At the age of eight my doctor placed me on the national wide list of Terminally Ill Children of America, and to this date I am still on the list.

Make-a-Wish heard of this and sent me to meet President Bill Clinton, http://forums.xisto.com/no_longer_exists/

At the age of twelve I went in to surgery again to remove the tumor, which has come back. From then on, I do not wish to release my medical history. Just recently, my doctor told me I may have to go back to surger in 2008 or 2009 to remove the tumor once again.

I think this has effected my life, made me see the world in a different way than most. At the age of seventeen I started a nonprofit website and it quickly rose through ranks and became the 205,000th most popular website according to Alexa. The website's point was to bring topics that are unknown to the public eye, about anything in the world to the public eye. Interviews and unique topics, the site quickly gathered support.

Do you think a condition could've caused this? A different perspective of the world?

How hard is it to grow up being disabled? I know it, living life as a normal kid and all of a sudden it's ripped from you, you're childhood ended and you're forced to grow up. Is it fair? What about those kids who spent all their lives in the hospital?

[Full.Clip 0]

You know, sometimes I believe some people were born into this world to be an example of life. Not in a bad way, but, I do believe in God and in my religious belief I think God has made plans for people to be a message or prophet if you must say. And yes, life is viewed differently when you have something on your shoulders such as a disability or life changing trauma.There was a reason why you had the motive to create that website and their is a reason why you received the publicity you have received. I just wish all people could understand the seriousness and the truth gift of living. My sister works with my brother and other people with disabilities and I have had the honor to actually interact with them and understand them.At the age of five my brother had a brain stem tumor and his symptoms were Axtaxia and a facial droop. We would be in class in kids would make jokes of him, and of course I defended him and got in trouble but I didn't care because it was just wrong and unethical. When money was finally available to get him medical treatment his symptoms had got worse. And like you his tumor kept coming back but with good treatment he didn't have to suffer those symptoms as often and is now living life and treated frequently. I wish he could reply here because you two have those things in common and I wish you both a blessed life.

[aoehq 0]

I, was born Hearing Impared, so i have to live life harder too. In primary school, at first, no-one bothered with my Hearing Aids, but then later at around 10-12, it started grabbing peoples attention. I have spent most of my time at primary school being teased about my Hearing Aids, i know, pain in the behind.Now, i go to a Highschool which have more people like me, so the school is used to haveing Hearing Impared, so i do not get teased anymore, only more girlfriends

[hippiman 0]

One of my best friends has arthrogriposis (<--spelled right?), he has shortened tendons and weak bones, so his hands are always forced toward his forearms, so everyone thinks he's a sped when they first see him. What really sucks is we think my programming teacher doesn't like him just because he's disabled. He told a couple of friends and I to sign up for an AP Comp Science class next year, but he hasn't said anything to him. He's probably smarter than any of us (we're Juniors and he's in Calculus, a year ahead of me), and my teacher still hasn't said anything. ;)I don't get what his problem is!?!?

[seez 0]

How Hard Is It To Grow Up Being Disabled?Very hard, I should imagine. All people who are disabled, my sympathy and prayers are with you.

[Saint_Michael 3]

I would say that those who are disabled at birth go through the problems the most go through at a young age and after they prove everyone that teased them wrong, they become a better and stronger person and with that they will be able to help those who are in the same situation as they were. But for those who lead an active life, who just become disabled for whatever means have a harder time coping with the fact that they now have to be supported by those around them. Although I am not disabled, my back surgery I had a couple of years ago could be a stepping stone to when I become older that I could be put into a wheel chair because my spinal cord can't support me anymore, but that will be a unlikely scenario, but a possibility.Of course everyone deals with being disabled differently, but once they over come the fact they can no longer do what they did years ago then they could be a even better person then they were before.

[Ridwan sameer 0]

Being Disabled?Worst thing that could ever happen to anyone. I too believe they are sent down by god as a sign.My prayers are with all the Disabled children. IT sometime makes you cry thinking about their future.I always give charity in the name ofgod

[Mermaid711 0]

I was blessed to not have anything, but there is a 45 yr old lady who live around the corner who can bearly talk. Everytime i see her, I say to my self, "Get over it there is nothing wrong with me." I am truly blessed.

[lilemi 0]

I wish we could help... How hard is it to grow up being disabled? I wouldn't know... I mean people complain so much when they break a leg and bump their head, but I never hear a blind person cuss when he runs into something or a deaf person punch someone who bumped into them. I agree with the first poster, all disabled people are pretty much an example and saying "This is what you should be like, but you aren't. Grow up and stop complaining." When you get older you understand this more, but when I was younger and my parents told me things like "think of the kids in africa" I didn't care. It really is sad how the most spoiled kids right now (who will probably end up as the most powerful in the future) don't grasp this concept either, although they hopefully will grasp it eventually. All we can do pretty much is support medical research and become scientists/doctors... But if being a doctor isn't your passion, it's hard to work for something and care about something you don't enjoy.

[Echo_of_thunder 1]

Oh I know all too well how it is growing up with a handicap. "Spina Bifida" Back then kids had home school.Don't even go there with the name calling from the other kids. Maybe it's just me or I have gotten older but seems as now it's a normal thing seeing someone who is blind, deaf, or in a wheelchair in a school. We don't even think twice about it now. But back in the 70's and even before that it was unheard of for any child like that to be in public or even to play with other kids. I have read all these post and I think of these posts here and I am reminded of just one thing.How happy we all are to be alive. Back in the day childern born with any kind of defect where just given up for dead.So many defects can be found and fixed before birth. Such as Spina Bifida. Some heart defects and others.So in closing I just sayKeep the faith and if anyone says to you, You can't. You look them dead in the eyes and say. I CAN!

[Vixen_Poetic 0]

I didn't grow up disabled, I grew up about as healthy and normal, physically, as could be. I was socially challenged: I watched what my peers were doing and couldn't help but think 'how idiotic' or 'how demeaning'. But I watched. I had a friend when I was young who fit that description; glasses, hearing aid and speech problems. Serious speech problems: continual exposure to her allowed me to adjust to understand her but after being seperated for a few years that ability was gone. She was ostracized by the rest of the class, which was a pity, she was a really sweet and sincere girl. Then I ended up in the outcast group in high school and it included a girl who had been born without legs from the knees down. She was not a nice girl, she wasn't nasty either, more self-absorbed. Between her disability and her father's money(lawyer I think) she assumed that what she wanted would be provided, and she wasn't in the habit of listening to other people.My husband grew up at a time when they didn't understand dyslexia or ADHD. He knew he was different but he was different physically too, so he was all just different. And besides, ADHD was a tendency of his Mother's family so he was normal for his family. He made friends and had fun, he's a really social guy. He's mostly gotten past the mild dyslexia but the ADHD is still a problem.Now we have a son who is autistic, and for a lot of his life since the onset he has seemed unaware that there is any real difference between him and his peers, and a more cheerful happy boy would be difficult to find, unless it's his brother with ADHD. For my autistic boy everything is dramatic. If something goes wrong it's a tragedy, when it gets fixed it's a reason to cheer and hugs all 'round. Has it been dificult for him? Yes, he gets teased by some but he has protective older and younger brothers who won't put up with that kind of behavior and will take all of them somewhere else to play if some of the not-so-nice kids around here get nasty. But has it been difficult for him? I think that while it has been more difficult I don't think he has been aware of how much more difficult it has been, for him his daily schedule and differences are a 'ground state' sort of 'just the way it is' for him.

[Bluebear 0]

When my older sister was born she was not able to breathe for a short time. Something clicked in her brain, so not everything is like it "should be." She has learning problems, and have a hard time doing many things I and others find very simple. Not being like everyone else is not easy, and I remember it very good. She is about 5 years older than me, and I remember that she came home from school often crying because others mocked her and she had no one to hang out with.There were this one time my mom and my sister was outside, and the other girls from the neighbourhood came walking by. My sister kindly asked if she could be with them, but they just gently choked their heads and walked by. It was not easy for me seeing my older sister unhappy, and that others did not like her. She is special, and she annoys me some times. But she is my sister and I love her.Though it has been hell living in the same house as her. Others would maybe say that we are treating her bad, but it is horrible going through the same screaming, yelling and complaining night after night. It was and it still is. She says mean things about my mom and family, and it seems like she thinks that she is the only person in this universe with problems. She thinks the world is spinning around her, that she is the focus point. Growing up with her was horrible, so I am glad she has to live somewhere else two nights a week. At the same time I feel sorry for her, because she is not like others and she would like to be like them. My brother and the rest of my family are quite thin but she is not. Others that have the same problems also seem to have some extra kilos on their body. It must hurt to look at others and go like; "Hey, I should be like them. I am weird and no one wants to be my friend." She has friends, but they all have jobs and are busy. Her job is not that hard, and she does not understand that they simply have not got time to spend time with her every single day. Also I feel sorry for her that she has almost no education.It is not just hard for those that are born "a bit wrong", or "not like they should be." It is hard for the families, friends and surroundings. My sister bascily ruined a lot of my childhood - but I know she could not help it. Being a little girl with an older sister that always begs for attention is exhausting. But deep inside I guess I love my sister - even though she pisses me off all the time.

[iGuest 3]

[Replying to hippiman,45889,318405My Name is Matthew ( Mixer Matt ) I also have arthrogriposis and I kind a understand what he's going through. Back in Jr. High I had the same prob. Where a teacher didn't like. It can stink at time being disabled and how poeple will Jugde a person for being disabled. I'm 47 years old now and life is ok I'm a DJ and doing something That I love, stay close to year friend and don't let any one say he can't do something, Give him a little push to help his dream come true -reply by mixermatt